Now this is a funny post. I can barely concentrate for long enough to write it.
A sentence or two.
Glaze into space.
A lot has happened. A lot I now notice I've told you in my head. The quiet but relentless storyteller in me I don't think I used to be so aware of. Now I see how much it whirs away, even when the engine has stopped. And now, piecing these words together, a bit of me somewhere else (where???!)... I feel as if by writing anything I'm cheating a bit here. There's a part of me that is really shutting down. And needs to. Needs to be kept carefully wrapped in its own cocoon. The bit of me that thinks. Not that I expect it to stop. I've mostly felt this as a desire to dive down deep into clear, silent, turquoise water. I could never dive down deep enough. Here I am coming up to the surface to say hi.
Progress has felt very slow. I've been seeing a second, amazing practitioner for ME and have been commuting from Oxfordshire to Surrey via London to see her almost once a week. Extremely kind friends putting me up, resting to recover between travel days. Navigating the trains and London is exhausting, but it's worth it. I'd do a one woman wheel-barrow race to Birmingham if it would make a difference.
There have been definite glimmers. Glimmers of energy. Brighter, lighter, clearer. So much has been dealt with, all that's left seems to be this final and ultimate conundrum; that the energy packs of my cells still don't function normally yet. And the more myself I become, the more of me there is to bash around inside this body that despite perfectly normal appearances, so often can't do what I will it to. I'm far from down for most the time but am shockingly tired. Shot to bits.
Lots of good moments: I've noticed that I'm almost never bored. Being with my parents who sometimes understand things even better than I do. Time with friends who are, quite frankly, rocking my universe. Making it seem when I'm with them, even if all I'm doing is hanging out in the kitchen or lying on a sofa surrounded by them, that I'm living an adventure. And the rarest blip in my recent human experience; going to a party looking down high over London and dancing as if everyone is watching for 7 minutes. Watching spring emerge and even if I haven't managed to coordinate my own emergence with it, my heart surges possibly more than any other year. Perhaps I am really emerging, only deep inside a tightly closed bud.
So many moments or days of paying the price. The very idea of moving hurting. This level of tiredness aches. Down days lived in a murky, messy scramble. The anger that finally surfaced and raged, no profanity obscene or colourful enough. Though I think a lot of it has a 'don't mess with me' determination and a very satisfying meatiness to it. No, the anger, the feeling pissed off has been a good thing. Much harder is thinking that I'm doing pretty well today on my way to treatment, when my body suddenly screeches to a halt. Children of the 80s, remember the Transformers cartoons and how they robotically shut down? It's a bit like that; a mechanical pulling of the power plug, 2 metres from an escalator at London Bridge.
I can't walk a step further.
That's when it's so easy for the despair to flood in. Only of course I do keep walking. Like a very, VERY slow, stately granny. Stately darling, stately. Until I eventually make it, via Surrey, back to my bed.
Mentally at least, I'm going to stay in this shut down state quite deliberately now. Lower the bandwidth. Go with it, nestle into the cocoon. It's what I need.
It's been so healing and helpful writing this; articulating it all, making sense of it, finding the meaning. I've found myself doing less of that recently. There is more meaning than I ever thought possible to find or create in what is happening to me right now. But it's unlikely to be anything my mind will really be able to make sense of. And I keep finding, when it really comes to it that my thinking self doesn't have a huge amount to offer. For all of its good intentions it's been meddling a bit. Meddling in a process far beyond its own capabilities.
I get self-conscious about sounding like a total sycophant, but as this is how it is, I really shouldn't care: there is no wisdom or state I could reach that would ever be more important than love. I will resurface any time for the people in my life. Sometimes you might even catch me holding up something exquisite (or hideous and fascinating) I've found on the ocean floor.
Photo by Eusebio and Christina Saenz de Santamaria, One Ocean One Breath, used with permission
An ME/CFS Thriver